One wife's story of ED

The ED nurse was adamant that J must not take any Viagra or Levitra in the next 12 weeks and that it is not permitted under NICE guidelines to have prescriptions for more than one ED treatment (yeah, right). She also said that once you have had a priapism, you are not normally allowed to have any kind of alprostadil, etc, ever again so I suggested she read John's notes which clearly show Mr P's risk assessment & rationale for allowing him to continue. I don't think she knew there was an antidote either.

Anyway, first dose implanted and 12 doses collected from the hospital pharmacy - John could feel some reaction although it took us 90 minutes to get home so not much usable erection.

I found I had to get up and walk around as the only way to get rid of it,

 Thank you Lyn and other contributors for this thread, useful background info for someone like me who is just beginning out to seek treatment for ED.

I am trying to hijack this thread with some questions, hope is okay ? I tried to start a new thread, but wasn't allowed?!

I am 12 weeks post op bilateral nerve sparing. Have been on Cialis 2.5 mg and have tried 20 mg extra on 2 occasions recently, sadly little response only, just about useful for masturbation, self/OH. (There was some activity within a few days post op and was very hopeful, but sadly nothing after and was told that catheter can sometimes give that sensation(

I am worried about atrophy mainly.

Penile pump seem to be the best option and scared to use injections etc.

My questions

1. Where can I buy medical grade pumps and approx costs? For various reasons I dont want to go to my own hospital ED clinic.

2. If Cialis doesn't work now, it should later? Or does that mean, tablets will never work for me ever? I was hoping this will be a simple treatment for ED. The urologist said tablets would work even if nerves are removed, but I had it spared and still doesn't work

3. How long will it take for penis to atrophy? Will masturbation stop penile atrophy (embarrassed to ask this)

4.  Any other suggestions.

Thank you in anticipation

Thala

I have now found several threads on ED, I didnt search the forum well until now and are very informative.

BW

Thala

Lyn,

thank you.........I said on other message board I should have taken more time prior to surgery but on reflection I have to say ....I did not know what I did not know.

Your honesty and humour are fantastic.

Good luck to you and other half

Chris answered this.

imedicare will come and demonstrate the pump on you at home for free (even if you bought it yourself), or you could ask to go to a pump clinic (where it's the same person demonstrating it on you). The pump success rates are doubled for people who have been shown how to use it by a professional.

You should be on 5mg/day, providing you don't have angina. The 2.5mg dose is for people who get unpleasant side effects on 5mg/day. This daily low dose works in 2 ways. First, it improves the blood flow in the flaccid penis and this may help prevent atrophy even if there are no erections. (Normally, the flaccid penis is ischemic, and relies on periodic erections to get a good blood supply to the tissues.) So even if you aren't yet getting erections, it probably is working on you. Secondly, it may help you get erections sooner, and make those erections more powerful.

Full erections achieved naturally or using Cialis (or other PDE5 inhibitors) are more effective in protecting the penis than those achieved with a pump, which only stretches the external part of the penis, and not the internal part (which is a similar size). However, use a pump until you can get full erections, as it will improve blood flow to whole penis, even though it's only stretching the external part of the penis.

Tablets absolutely won't generate erections without working nerves. The tablets amplify the arousal signal carried by the nerves from the brain to the penis, but if that signal doesn't reach the penis, there's nothing to amplify. Tablets will improve flaccid blood flow in this case though.

I heard a figure a couple of weeks ago that only 1% of men on hormone therapy (which also limits, and in some men stops erections) don't have some atrophy after a year, although I don't know if there's any scientific basis for that figure. Anything that generates erections, including masturbation will help prevent this. Aim for 15 mins erection every 2 days (imedicare suggestion). Reaching orgasm is not necessary.

And don't be embarrassed to ask. When you can achieve good erections via masturbation, that will be more protective than a pump, due to the pump only stretching the visible part of the penis.

12 weeks is probably a bit soon to expect anything. 6 months is more typical, but keep up the exercises.

That's a good result at just 12 weeks out. Although one can never be sure in advance, it suggests you are likely to make a good long term recovery.

I have just sat and read this thread all the way from the beginning and thank everyone, especially Lynn for sharing so much.  My husband was diagnosed with advanced PC last summer, Gleason 8 with tumours on about 6 vertebrae,  he started on 12 weekly injections of HT Decapeptyl, we live in France so treatment is possibly different here.   In Nov/Dec  he had 10 sessions of RT, not on the prostate, but on one of the spinal tumours that was threatening spinal compression.  The docs here prefer to use Abiraterone as a first line defence, so he was given the decision between chemo or Abiraterone and has now been on Zytiga for 2 months.  Prior to any of this, even after 40 years of marriage we had an active, and very good sex life.  We have been very lucky in that it has always been an important part of our marriage for both of us, so never any problems before.  The effects of all the treatment has therefore been sudden and brutal for us both.  The oncologist prescribed Vitarol cream which has only ever worked once, and even then it didn't do exactly what it had promised.  As my husband has had a triple bypass some years ago, he has to take heart medication, so this rules out any viagra type tablets.

We are considering a pump, but the one suggested by the oncologist is not covered by health insurance here and costs nearly 400 euros - apart from the fact that we would find that quite a lot of money to find, it is a concern that we may shell out that much money and then find it doesn't work.  So I'm wondering if it's just best to buy a cheaper one over the internet and give that a try first.

I am pretty sure that my OH's libido has diminished considerably, he says not, but I suspect he's just being kind and doesn't want to upset me but we both feel a real sense of grief for the loss of the intimacy we previously shared.  He's loving and still very affectionate, but sometimes that can make it worse,  I am finding it really hard (or not, actually!) to accept that we may never make love again.  There aren't the support groups over here that I know are in the UK, the oncologist will talk quite freely about sexual matters but obviously his time is limited and there isn't anyone else to talk to.  

His PC was found 6 months ago after a routine blood test, he had no symptoms at all, so that fact alone was a shock, to discover it was already in his bones completely floored us both - we are finding it very difficult to get back to the busy upbeat sort of people we were not very long ago!  

Thanks for listening - I'd be interested to hear about the efficiency, or not, of any of the cheaper pumps available.